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» LymeNet Flash » Questions and Discussion » Medical Questions » minocycline side effects -- altered personality, non-stop headache and irritable?

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Author Topic: minocycline side effects -- altered personality, non-stop headache and irritable?
Vermont_Lymie
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Did anyone have this effect from minocycline? It would help me to hear other people's experience or advice.

I just started taking a very low dose of it about two weeks ago,

I am only taking 50mg every 2-3 days!! This is about one-tenth of what other folks take, which my llmd says is 200mg/day of mino.

I know, it sounds like a herx, but Is it possible to herx on such a small amount?

He said to start slowly because sometimes people cannot tolerate minocycline. I am also taking high-dose amoxy, which has helped alot this year but not taken care of all my major neuro symptoms, like dizziness.

Everytime I take 50mg/mino it is an intense effect!! Makes me feel hyper, and very irritable! And I usually get a headache the next day too. Lots of head pressure and some spaciness, which gradually goes away.

I am amazed anyone can take 200mg/day of this drug. Does it get easier over time? I need something else beside amoxy for treatment, and I am allergic to IV rocephin.

I am also taking buhner herbs and detoxing, which helps.

Thanks!
[bonk]

[ 29. June 2007, 04:09 PM: Message edited by: Vermont_Lymie ]

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farah
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Hi VL,

I took 200mg/day of minocycline and it made me brain herx. It is one of the antibiotics that penetrates the brain and nervous system well. Your symptoms sound like a herx to me.

Farah

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farah
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I also took the smaller amounts you mentioned and they made me herx, too. Especially since you are combining it with herbs like I did.

Farah

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LaurenTurner
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This scares me. I just started taking mino today. Within about 15 mintues of taking it this morning, I started feeling VERY nauseous. I hope I can tolerate this. I'm taking 200 mg a day. [Eek!]

I hope you start to feel better! [Smile]

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Vermont_Lymie
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Hi Farah -- thanks for posting and sharing your information. This is some powerful stuff. Somehow, hearing the experiences of others helps me to get through these adjustments. It is one of the main values of lymenet for me.

Lauren -- Thanks and sorry to scare you, please do not be too scared!!

One thing I have learned for sure is that everyone reacts differently. Herxing can be hard at first, but it is something that we all have to get through to get better.

I am also taking high-dose amoxy and lots of herbs, so maybe that is why I am sensitive to low-dose mino...

If you are nauseous, try taking some ginger. In any form, ginger can help nausea -- as a tea, in a capsule in powdered form, or just chewing on pieces of fresh ginger. Hope that helps, it always takes care of any abx nausea for me.

I have been in treatment for about 10 months and the herxing is always worth it because you feel better afterwards!

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achey
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Mino can be a very powerful drug for neurolyme, but also very effect for clearing the brain and reducing swelling.

When I first started on it at 100mg I could only take it every 3 days, but it was the only abx I was taking at the time after coming off IV's.

Make sure you are doing whatever you do well to detox... Water , lemon water, epsom salt bathes, teas, saunas, etc, and remind yourself, that this will get better.

Later I learned to love minocycline, because it was the abx that really made me feel good and clear. But the space between the beginning and love was challenging, and emotional, and sometimes strange.

Please build slowly and be patient, and when there's a question double check with your LLMD!

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bftmt22
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Hi there,

As I mentioned in another thread recently, I had

a VERY hard time tolerating the Mino/Rifampin (along with Bicillin)

combo I was on. I was on 200mg/day of the Mino.

I definitely had all of the effects you mentioned

and more. As others mentioned, Mino gets into

the brain really well, so I would think it would

make sense for a herx from it to be very

neurological in nature. I had much too hard of a

time with this combo and tried a few times, but

after a few scary experiences decided it wasn't

worth it for me personally... But I don't know how much was the

Mino and how much was the Rifampin, and

everyone's bodies react to meds very

differently. Hope you find that it works for you.

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Annxyz
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It has worked well for many people, and most can tolerate it if they start low w/ dose and work up .

I would test the waters w/ 50 mg , then go to 100 mg , etcc

Mino can cause brain swelling , but I think it is not a problem if you start the dose lower . starting at 200 ( for most people ) is risky , IMO.

--------------------
ANNXYZ

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Annxyz
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It has worked well for many people, and most can tolerate it if they start low w/ dose and work up .

I would test the waters w/ 50 mg , then go to 100 mg , etcc

Mino can cause brain swelling , but I think it is not a problem if you start the dose lower . starting at 200 ( for most people ) is risky , IMO.

--------------------
ANNXYZ

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Annxyz
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It has worked well for many people, and most can tolerate it if they start low w/ dose and work up .

I would test the waters w/ 50 mg , then go to 100 mg , etcc

Mino can cause brain swelling , but I think it is not a problem if you start the dose lower . starting at 200 ( for most people ) is risky , IMO.

--------------------
ANNXYZ

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savebabe
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Hi VL,

I could not tolerate mino at all. I had the same head pressure and dizziness that you are experiencing.
I have found IM bicillin to be the best med for my nuerological symptoms.

I hope you feel better soon

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Dave6002
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Mino is a better choice over Doxy for neuro-penetration:

[ 08. July 2007, 09:06 PM: Message edited by: Dave6002 ]

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gambler
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Every abx has made me feel terrible, this is the first break of misery I have had in 21 months. I am starting Amox.

But Malarone was the worst, and your Mino symptoms sound like my Malarone ones. I started Mino first, and had been on it for a couple month when I added Malarone. My head went from constant pressure to a pressure chamber of torture. And I lost my mind.

So, it could be the combo of mino and malarone. It was 6 weeks of misery that I don't think I would survive again. And slowly it started to let up, and the 5 year constant headache was gone.

Mino also made me unswell, I had no joint pain, I loved that, it helped my nerves, and my cognitive stuff, but I turned gray and had to stop it. I think it was a really effective drug and I wish I could still take it. But the derm said not only could it take years to go away, it could be permanent.

I know that I was dizzy when I was on it, but then again, my dizziness has progressed to passing out, and I am not on it anymore.

Good luck.

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Anneke
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Hello there,

Not too long ago, someone here posted a very informative medical paper on how both Mino. and Doxy. can cause something called "pseudotumor cerebri". I would do a search on Lymenet using those words.

In essence, it can be a dangerous result of the medication. It causes a build up of pressure in the spinal fluid which leads to really, really bad headaches which can include ear pain, neck pain, and a swishing/heartbeat like sound in the ear.

It's really important to ensure that this is not causing your headache vs. a herx, because that condition can in the worst case scenario cause vision problems and even blindness.

I would definetely read the medical paper from last month or maybe the month before that was posted on this, and call your doctor.

Sometimes we assume that horrible or unusual symptoms from an antibiotic are "just a herx", when sometimes it could be a side effect of the abx. itself, or the abx. could be causing a serious problem unrelated to herxing.

I would back down on the dose for sure in the meantime. It's all my opinion of course!

Best wishes,

Anneke

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Anneke
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Hello there,

Not too long ago, someone here posted a very informative medical paper on how both Mino. and Doxy. can cause something called "pseudotumor cerebri". I would do a search on Lymenet using those words.

In essence, it can be a dangerous result of the medication. It causes a build up of pressure in the spinal fluid which leads to really, really bad headaches which can include ear pain, neck pain, and a swishing/heartbeat like sound in the ear.

It's really important to ensure that this is not causing your headache vs. a herx, because that condition can in the worst case scenario cause vision problems and even blindness.

I would definetely read the medical paper from last month or maybe the month before that was posted on this, and call your doctor.

Sometimes we assume that horrible or unusual symptoms from an antibiotic are "just a herx", when sometimes it could be a side effect of the abx. itself, or the abx. could be causing a serious problem unrelated to herxing.

I would back down on the dose for sure in the meantime. It's all my opinion of course!

Best wishes,

Anneke

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tailz
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Did you really turn grey??? Mino was one I wanted to try because it kept me acne-free through my 20's.

I think I'm going to call and ask my doc to switch me to amoxi and mino. I just can't handle turning grey after what this did to my hair, teeth, etc...

How grey and where? This is frightening. I actually was sweating grey last summer, so it isn't looking good.

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Vermont_Lymie
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Thanks so much everyone for your replies, this is very helpful and supportive information. I am going to stick with the very low dose for now, 50mg/ every 3 days.

Anneke, thanks, I will definitely look up that article. The headache I get from mino lasts much longer than any headache I have ever had, except from acute lyme (that is, in the weeks after the tick bite that gave me lyme and co-infections.)

Gambler, yes, malarone has been tough on my emotions and psyche too. Perhaps it is the mino/malarone combo that is especially hard, thanks for sharing your experience. I am looking forward to stopping malarone at the 5 month mark, in the next month!

Savebabe, achey, Annxyz, bftmt22 -- thanks so much for sharing your experience!

Babe, I would love to switch from oral amoxy to Bicillin shots, but for some reason my doc has not preferred that route. I have heard from several here that the IM bicillin has greatly helped their neurosymptoms. Thanks for the info.

Dave6002, thanks for posting info!

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liz28
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Mino can cause OCD symptoms in some people, which they ignore, thinking they are experiencing a herx, not a side effect.

There are many other antibiotics you can try besides this one if you can't tolerate it.

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gambler
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tailz:

Gray. With a dab of brown. It was more like muddy water.

The derm said it was "remarkable that it could happen in four months", I guess it usually takes years.

My mom said I looked like a clay person.

Most of it has gone away.

gambler

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Charlienj
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quote:
Originally posted by Anneke:
Hello there,

Not too long ago, someone here posted a very informative medical paper on how both Mino. and Doxy. can cause something called "pseudotumor cerebri". I would do a search on Lymenet using those words.

this is the post:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=053159

just happened to be the one post I've bookmarked...

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Vermont_Lymie
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Thanks Liz and Charlie for the info -- those are pretty important side-effects to know about. Especially the pseudotumor cerebri.

Liz, the OCD side effects are interesting. Perhaps this is why I spent 5 hours cleaning my closet on my Friday -- a record for me!

For now, I am going to stick with my doc's original recommendation of 50mg/ every three days, and monitor the side-effects.

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